The needs of parents and opinions of interdisciplinary team members in perinatal palliative care: A qualitative study

The aim of this study was to determine the perinatal palliative care needs of the parents, who were diagnosed with fetal abnormality, and to the opinions of interdisciplinary team members. The study was conducted as a phenomenological research. The study was carried out in a women's health training and research hospital between 18.08.2016 and 18.07.2017. The sample of the study consisted of 30 parents, who were diagnosed with fetal abnormality and continued their pregnancy, and 40 interdisciplinary team members serving to this group. The Parental and Infant Information Form and the Semi-Structured Parental Interview Form were used to collect the data of the parents. On the other hand, the Interdisciplinary Team Members Information Form and the Semi-structured Interdisciplinary Team Members Interview Guide were used to collect data of the interdisciplinary team members. The content analysis of the obtained data was performed by using the inductive method and the categories, themes, and sub-themes were determined. The Categories of Parents' Needs in Perinatal Palliative Care were the experience of learning pregnancy, the experience of pregnancy follow-ups, the experience of being diagnosed with fetal anomaly, decision-making process, delivery process, postnatal process, pregnancy, childbirth, and postpartum period. The Categories of Opinions of Interdisciplinary Team Members were the concept of death, death perception in professional life, perception on fetal death, the experience of being diagnosed with fetal anomaly, team approach to reporting diagnosis/fetal death, decision-making process, delivery/fetal death process, postnatal process, pregnancy, childbirth, and postpartum period, and perinatal palliative care program. As a result of this study it was showed that the parents, who were diagnosed with fetal abnormality, had physical, psychological, social, and spiritual needs through pregnancy, childbirth and postpartum period, and these needs were not adequately met and the interdisciplinary team members serving to them wanted to provide perinatal palliative care services, but the individual, institutional, and cultural barriers were present.